The medical community identified the term cancer survivorship in the 1980s as a way to distinguish the medical needs of people who had undergone cancer treatment.6 Since then, the term has absorbed new social meanings. Cultural and personal investment in the Survivor runs deep, and on several occasions I have witnessed people in support groups discussing their dismay both at the term and at the implicit taboo against critique. As one person said, “It’s as if being against the survivor rhetoric means being against living.”
The dictionary reflects the uneasiness of these discussions. Survivor can mean, on the one hand, someone who has survived a dehumanizing and degrading experience of terror, or on the other, someone who outlives others. Whereas the first definition gestures toward survival of the kinds of histories that have led to various stripes of identity politics (based in race or gender, for example, in racist or misogynist cultures), the second overlapping definition reflects living beyond an event in which others die (the veteran of a war, the cancer survivor, the widowed survivor of her husband).
I initially resisted the moniker cancer survivor because I didn’t want an identity built on the backs of those people who didn’t survive.7 I thought it all seemed pretty arbitrary—after my diagnosis, my mom would say that she wished it was her, instead of me. But then the next year it was her as well. Survivor-style math doesn’t allow for substitution.
Once in the emergency room at Stanford Hospital the nurse said to me, “Oh, I’m a sister.” I couldn’t tell if she meant she was queer or if she had had cancer, but either way it was a powerful, not unwelcome, call to identify. Don’t get me wrong—I’d rather survive (usually). And a touchstone for commonalities can be good. It’s just that the form that contemporary survivorship takes in relation to statistics—survival against the odds—combined with enthusiasm for one’s own potential agency in cancer’s battles, hides the conditions of probabilistic language, and in so doing leads us away from an opportunity to think through other possibilities for identification. Maybe I’d prefer something like cancer survivor as opposed to cancer survivor. The distinction is perhaps ham-fisted, but I mean to indicate with the former category that people who have gone through certain of the hoops of cancer to some extent share an experience that has potentially identity transformative effects. The latter category transfers the emphasis away from the commonalities and toward the individual, particularly through a triumphant ideal of the human spirit. That part of the cancer survivor identity struck me the wrong way.
Physician Bernie Siegel bows to such restricted language in his Love, Medicine, and Miracles: Lessons Learned about Self-Healing from a Surgeon’s Experience with Exceptional Patients, in which he suggests that there is a right attitude needed to survive cancer.8 In portraying cancer survivorship as a moral calling, Siegel implies that dying results from a personal failure. Siegel-style literature offers another form of torture to people with cancer: Did my mind declare war on my body? Am I a cold, repressed person? (Okay, don’t answer that.) The huge and punishing self-help industry preys on fear and adds guilt to the mix. As one woman with metastatic colon cancer said on a retreat I attended, “Maybe I haven’t laughed enough.” She added, “But then I look around the room and some of you laugh a lot more than I do and you’re still here.” She died a year later, though she laughed plenty at the retreat.
Another version of attitude v. cancer can be seen in the ubiquitous language of battle. Self-avowed cancer survivor Kristine Chip echoes a common refrain: “I had a quote 40% chance for survival for 5 years and 25% for 10 years. Now, did I live by those statistics? No. Did I let them influence the way I battled the disease? No.” Chip instead turned inward: “With a positive attitude and hope, you can conquer anything.”9 Chip specifically does not battle other people who will die so that she may live. Rather, she configures her agency in relation to statistics about her disease.
The very possibility of surviving odds emerged relatively recently. Not coincidentally, the culture of the cancer survivor rose in tandem with the consolidation of cancer statistics and their disclosure to the patient through the last couple of decades.10 The term survivor itself, however, has had a longer life.
In 1624, John Donne wrote about the survivor in his masterpiece, Devotions upon Emergent Occasions.11 The chapter title of Meditation XVII (Roman numerals seem apt) slays me: “Now, this bell tolling softly for another, says to me: Thou must die.” He languidly, almost pleadingly, writes of the communal nature of survivorship:
Who casts not up his eye to the sun when it rises? but who takes off his eye from a comet when that breaks out? Who bends not his ear to any bell which upon any occasion rings? but who can remove it from that bell which is passing a piece of himself out of this world? No man is an island, entire of itself; every man is a piece of the continent, a part of the main. If a clod be washed away by the sea, Europe is the less. . . . Any man’s death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bell tolls; it tolls for thee.12
After Donne, survivor loses its communal reference, coming to describe not the individual reminded of his mortality by the death of another, but rather the one distinguished by his longevity. The survivor exists as temporally dislocated from the collective.13 The combination of Siegel-type notions of the exceptional patient and the ways in which prognoses have come to situate individual patients underpin and enable Chip’s notion of survivorship.
The noted biologist Stephen Jay Gould wrote something of a how to survive statistics guide after his diagnosis with abdominal mesothelioma. In “The Median Isn’t the Message,” Gould shows us that hope can be found in the “right skew” of a curve that describes his own gloomy odds in which half of those diagnosed will die within only eight months (fig. 2). The gradually declining curve to the right, though, indicates that some of those who survive the first eight months will live for years and even decades. As he points out, “There isn’t much room for the distribution’s lower (or left) half—it must be scrunched up between zero and eight months.”14
FIGURE 2. Francois Colos, diagram appearing in the original publication of Stephen J. Gould’s article “The Median Isn’t the Message” (Discover, June 1985, 61).
Everyone hopes to be represented by that right side of the graph, which floats gradually back down and eventually correlates with those few who live out a normal lifespan; that is, they die of something else. Gould did indeed remain in that latter side of the graph for twenty years. Early-twentieth-century novelist Hilaire Belloc wrote that statistics offer a “victory of sterility and death.”15 In my estimation, that victory can be experienced in the plummeting feeling of the search for oneself in the graph. Or the victory might be one step removed; after all, the graph encourages this self-centered search for oneself in a way that Donne’s communalism would not brook.
This graphed representation could not differ more from another version of survivorship: the Holocaust memorial. Museums, web pages, documentaries, and Hollywood movies have all developed a unique material culture that aims to breathe historical life into those who underwent the brutalities and genocide. The familiar images of barbed wire; emaciated, bald bodies with loosely hanging striped uniforms; piles of corpses; bodies in mid-crumple after a shooting—these stand as markers of precisely what we must remember, the deaths and the specific vicious way in which those deaths occurred.
The last few Jewish survivors have been ascribed the role of bearing witness to the Nazi devastation. Their tattoos and their children—fleshy repositories of that history—haul the burden of ensuring that history “never again” repeats itself. At the Holocaust Museum in Washington, D.C., observers are ushered strictly through the displays and one can’t shy away from much. You arrive on the second floor to a pile of the thin black and brown midcentury shoes taken from people before they entered the gas chambers. Hundreds? Thousands? At once universal—anyone could have worn them—and also specific, each bears the particular moldings of the foot upon which it was worn.
Each single, anonymous, stiffened shoe tossed